By Misty Oto

I remember the day my stepfather and mother made the decision to separate after 17 years of marriage. It was after her social worker at the local Social Security Admini-stration (SSA) office informed her they would have to wait two years to be eligible for health benefits. However, if they separated, she would qualify for Supplemental Security Income (SSI).

SSI is a federal program designed to help the disabled with little to no income. After working and for more than 20 years, she found herself disabled by Huntington’s Disease in the prime of her life. Hunt-ington’s Disease is an inherited neurological degenerative brain disorder that takes away your ability to walk, talk and reason.

It strikes most individuals between the ages of 30 to 50 years of age—ages that are far from 62, which is the age required to be eligible for Social Secur-ity. Last Jan. 26, Congress-man Bob Filner introduced H.R. 678, a vital piece of legislation for those afflicted with HD. This bill, if adopted, will require the Social Security commis-siner to revise the medical criteria for evaluating disability in a person diagnosed with Huntington’s Disease and to waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington’s Disease. The current neurological listings for disability have not been comprehensively revised in more than 20 years. Since Hunting-ton’s Disease is considered a rare disease, SSA caseworkers and physicians are generally unfamiliar with the complexity of symptoms.

While the SSA has been working to reduce the current backlog of disability requests that affects people with HD, the number of delays and appeals will continue to rise until all SSA physicians and caseworkers are given accurate medical information on which to base their eligibility decisions.

This combination of outdated listings and a lack of general understanding about HD causes delays and errant denials during the determination process.

It is an inevitable fact that HD eventually renders every person affected by the disease unemployable. Often, by the time a disability application is “under review,” many applicants have already lost their jobs—and their employer-provided health insurance benefits for themselves and often their families. This lack of insurance often results in insufficient treatment during the early stages of the disease and places enormous stress on the family caregiver and children. If access to Social Security disability benefits and Medicare is to improve for individuals with HD, strong congressional support and action is needed to support H.R. 678. San Diego County is home to many Hunting-ton’s Disease patients and families. So, it is no surprise that San Diego is where H.R. 678 was introduced. Along with Con-gressman Bob Filner, Congressman Brian Bi-lbray and Congresswoman Susan Davis have agreed to co-sponsor H.R. 678. The introduction of H.R. 678 is the first step in the legislative process. It will be deliberated, investigated and possibly re-vised by the House Committee on Ways and Means before it will go to general debate and, without congressional support, H.R. 678 may never make it out of the committee—the fate of many pieces of legislation.